Overview

Overview

The ACP Repository is a collection of biological samples and data from people with Multiple Sclerosis (MS) and other demyelinating diseases, their affected and unaffected relatives, and unaffected, unrelated matched controls.The demyelinating diseases represented are: MS and Clinically Isolated Syndrome (CIS), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON).

Biosamples and data are provided quickly and at minimal cost to researchers so talented scientists can devote their efforts to their novel research instead of the laborious process of sample collection. The Repository is an open-access resource, meaning that samples and data are available to all researchers regardless of institution or location. Our primary condition for using the biospecimens is that new results from these research studies must be returned to the Repository Database for the future benefit of all researchers.

Since the ACP Repository was started in 2006:

  • 10 leading MS clinics from across the U.S. have enrolled almost 3,000 study participants
  • We’ve provided biosamples and data for more than 60 research studies worldwide; these studies have contributed significantly to the understanding of MS and related diseases
  • More than 250 million individual results from studies with our biosamples have been returned to the Repository Database
  • Research using our biosamples has already generated one blood test that may help determine whether a person has MS

Learn more about how the ACP Repository is:

Collecting samples and data

ACP oversees the Repository and works with three vendors—SeraCare BioServices, Inc. (SeraCare), Document Solutions Group, Inc. (DSG) and Theorem Clinical Research—to store the samples, manage the data, and manage the collection sites, respectively.

Our collection sites have been selected based on the patient population they serve, their geographic location, and their willingness and ability to perform the study. Study personnel at each site identify potential study participants from their patient base and from within the local community, and any individuals who are interested are screened against the inclusion/exclusion criteria for the Repository.

Eligible patients who give consent for participation come in to the site for a study visit where they have their blood drawn and participate in an interview to capture clinical and epidemiological data. The blood samples are sent to SeraCare for processing and storage while the interview data is stored at DSG. ACP has implemented a system of unique barcodes to identify samples and data so that no personally identifying information can be linked to the samples or data.

Participating study participants are asked to refer any relatives who have one of the specified demyelinating diseases as well as one or two unaffected blood relatives or unrelated matched controls.

Our study is longitudinal, meaning that people with a demyelinating disease (cases) may be asked to return at a later date for a new interview and additional sample collection. Those without a demyelinating disease (controls) may also be asked to return periodically. By following study participants over time, we are able to ask additional interview questions, replenish previously collected samples, and obtain new types of samples.

Find out more about how to participate as a researcher or a study participant

Distributing samples and data to researchers

Researchers who wish to request samples and data from the Repository submit an application describing their proposed research experiment and the samples and data required.

The Repository Oversight Committee evaluates each application to determine how the work will further MS and related disease research and makes recommends regarding the application. When ACP approves an application, samples and data are released to the researcher following signing of the materials transfer agreement.  As a condition of receiving samples and data from the Repository, the researcher agrees to submit the per-sample data resulting from the use of the samples for inclusion in the Repository database.

Read summaries of the research studies that have been supported by the Repository.